Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Monday, 18 March 2013

What a very funny day today has been, in both senses of the word. Funny, odd, surreal and peculiar funny all morning at the hospital, then good old-fashioned funny-ha-ha at the largest Laughter Yoga event I've so far organised, with a manic rush to buy industrial quantities of pens and balloons and getting a stack of photocopying done in the twenty minutes we had between one and the other, with nowhere to park anywhere close to the printers or the pen and balloon shop. WM heroically drove around the block a dozen times while I organised the Laughter Yoga supplies. Yes, I know there should have been a few full stops to break up that incredibly long first sentence, but there really wasn't any time for full stops or drawing breath at all today. No time to process the information we'd been given by the Oncology team, no time to wonder what the future holds or to stress about how to get through the next 3 weeks of uncertainty. To be honest, it's probably easier this way.

It was results day at the hospital, following the CT scan I had on Friday. Ever since Christmas, I've had chest pains and been breathless, so I more than half expected to hear that the cancer might have spread to the lungs or breast bone, or that radiotherapy had caused some degree of lung damage. Instead they've found something suspicious on my spine, that may or may not be cancer, and there will be more tests and a 3 week wait til we know one way or the other. It's a lesion, which is the medical word for abnormal growth, on one of my vertebra, and it's not quite a centimetre in size. It could be arthritis, or an injury, or caused by a load of other things, but it may be cancer. If it is, it's not great news, but it's not the worst news in the world either. It would almost certainly be a spread of the breast cancer they've tried to banish over the past several months, and if it is, it's incurable, but that doesn't mean that it can't be treated and "managed". Apparently the prognosis for a spread into the bones is much better news than a spread into other organs, but it probably means I won't live well into my eighties. Stupidly I've googled since I've been home, and frightened myself half to death, which would be a bit ridiculous when I actually want to keep on living for as bloody long as I can.

Anyhow it might not be anything to worry about at all. So, just in case my worry muscles aren't getting enough exercise at the moment, the breathlessness and chest pains will also be investigated further, with that scary old chestnut of Pulmonary Embolism raising it's naughty little worrisome head all over again. So as if I don't have enough to keep me busy, tomorrow I'm having a very detailed CT scan of my chest, and in the next few days, an MRI will be organised to look closer at this spinal annoyance.

Clinic was running very late, and was overbooked and there was only one doctor to see everyone. The minutes were ticking away ominously close to the time we needed to be 4 miles away to run the Laughter Yoga session. I asked very nicely, and we were fast-tracked, but it meant we were leaving the hospital car park with only 20 minutes to spare, and a load of stuff to get done, before the Laughter Yoga session on the other side of town.

We made it, goodness only knows how. While the participants had lunch, we blew up several dozen balloons and collated leaflets and disclaimer forms and feedback sheets. The session went very well, and it was probably really beneficial to me too. Laughter Yoga lowers blood pressure (oh boy by the time I arrived mine must have been off the scale), boosts the immune system, counters depression, and increases coping abilities, everything I needed straight after the maybe bad news hospital appointment.

It was a good session, we sang, we laughed, we played and we danced - all the four corners of joy that none of us get enough of in the hectic 21st Century. We finished, as always with a relaxing meditation, and the feedback forms we've had were warm and enthusiastic. Best of all, we raised another £100 for Sutton Mencap's Sensory Room Project, bringing our total raised through Laughter Yoga sessions to a very respectable £507 so far.

More money was raised yesterday for another fabulous cause - the Marsden March. We were there at the finishing line to see my disabled son, Toby, complete the 14 mile walk in the pouring rain with two really good friends who pushed him all the way in his wheelchair. I was overcome with emotion and I'm not ashamed to say I burst into floods of very proud and happy tears when I saw the three of them approaching, cold, wet and bedraggled, but wearing really happy smiles, along with 4,500 others, raising amazing sums of money for cutting edge cancer research.

So many other things have happened recently, and yesterday I did promise loads of photos today, but uploading them right now is just a bit too much to deal with when I really should be getting my head around cooking dinner and all sorts of other domestic stuff. And pouring wine - a must-do tonight I think. The photos will happen, just not today.

Amazing weekend away in a seaside hotel where absolutely nothing is too much trouble, and they only accept bookings from guests with cancer or other very serious conditions. A really scary time with someone who I love very much indeed needing emergency life-threatening surgery. Health scares for me too - tomorrow morning I'll get the results of the body scan I had to have on Friday to see if this cancer of mine is actively on the march all over again. Real sense of achievement with Laughter Yoga sessions, and a big challenge tomorrow afternoon with my biggest session yet - 60 or more participants, dauntingly exciting. Bursting into tears of pride and overwhelming gratitude today seeing my disabled son cross the finishing line of a sponsored walk across London, with two very dear friends pushing him all the way in the pouring rain. A puppet that looks just like me specially made for the stage play of this blog. So much to tell. No time to do it justice. I'll try and post about all this and much more in the next few days. Until then, please wish me luck for the morning.

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.